Expert: Mary Gordon - 2/11/2011

Question
QUESTION: Dear Mary,
       I am having serious problem in dealing my mother in law. She is an Alzheimer patient.She does odd things like sometimes she uses mosquito spray for washing,and when we stop her she becomes angry and starts scolding me.Some times she says bad words to me.The problem is that she does not understand anything.She has sugar cravings also .She can eat 1 kg of sugar in just three days.Now my husband and i have given her alternates of sugar like sweeteners and biscuits but she eats biscuits a lot.If she does not find sugar she becomes angry.We have hidden everything that is dangerous for her.She doesn't understands things and fights when stopped.Please suggest some ways to deal her.thanks.

ANSWER: Hi Farsha.

I know how frustrating this is, but you have to keep reminding yourself that she really can't help it. She isn't doing this on purpose and you can't take it personally, as exasperating as it may be. She has progressive brain damage, and she is doing the best she can with what her poor injured mind will allow. She can't stop herself. She can't see how her behavior affects other people, much less really understand she has a problem. You can't reason with her because her ability to think things through logically is impaired.

Here is a good article that helps you to understand what she is going through
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

Here are 10 fabulous rules for dealing with a person with Alzheimer's, as collected by Dr. Robert Stall.

1. Never argue, instead, agree
2. Never reason, instead, divert
3. Never shame, instead, distract
4. Never lecture, instead, reassure
5. Never say remember, instead, reminisce
6. Never say "I told you", instead, repeat
7. Never say "You can't", instead, "Do what you can"
8. Never command, instead, ask or model
9. Never condescend, instead, encourage and praise
10. Never force, instead, reinforce

Humor and distraction really are your best friends.
Also some tips from the Alzheimer's Association
http://www.alz.org/texascapital/in_my_community_14326.asp

A useful book to buy is called The Thirty Six Hour Day (fourth edition) by Mace and Rabin. It is a softback and very helpful.  

On the food issue, some people with dementia may eat too much food. They can forget they have just eaten or they may have a persistent desire for certain foods, such as sweets. It can be a problem if the sweets kill their appetite for more nutritious foods at meal time, or if they start to gain weight from overeating.

If weight gain becomes an issue, try to keep a good supply of healthy snacks on hand, like pieces of fresh fruit or vegetables like carrot or celery sticks. If sweets are an issue, I'd keep them out of the house - if you do the shopping, you can control her supply, or store them somewhere she can't get at them. I know you don't want to be mean to her, but you don't want her health to be impacted by overeating or too much sugar. You will also want to make sure she is getting enough protein and vitamins.

The overeating is particularly common with the frontal lobe dementias (sometimes called frontotemporal dementia or FTD - there are several types within the category). You might want to ask her specialist if she might have a frontal lobe dementia rather than Alzheimer's. They all end up in the same place (i.e. incurable, progressive, and ultimately leading to complete incapacitation and death). However, it is worth knowing if she might have a frontal lobe dementia, just because some of the symptoms can be a bit different and it always helps to have some idea what to expect.

Binge eating is not uncommon in dementia - although it is most common in FTD. It is called hyperphagia. Feeling full is not just about having a full stomach. You feel full when your brain tells you you have had enough and if that mechanism is damaged, you can keep eating. Another theory is that serotonin levels in the brain are impacted by the dementia, and the compulsion to eat sweets in particular is an effort to boost those levels.

There are several studies that show that people with dementia related hyperphagia will continue to eat as long as food is put in front of them (i.e. if you put three lunches in front of a person one after the other, they might just keep eating). As I said, this may because they don't recall eating each one, and their brain isn't telling their body that it has eaten enough.

One of the reasons your mother in law's taste in food has changed is that the brain damage profoundly impacts her ability to smell and taste - which means things she formerly disliked may no longer be unpleasant to her. Because of loss and changes in smell and taste, sometimes they develop a preference for very strong flavors or very sweet things because they can still taste them.

I would try to keep her busy and occupied as a distraction from food - if you can redirect her to some activity, it might help. I don't know if you have considered adult daycare or a sitter to take her out of the house for a while, but it can be a tremendous boon to a caregiver, since the daycare and activity can keep her supervised and occupied all day and provide her with opportunities for socializing, activities, and exercise that would be close to impossible to provide in the home environment. It also can give you a break knowing she is supervised and busy, and you get some rest, or accomplish some tasks or errands.

You might want to keep your eye on her to make sure she doesn't try to eat non-food items. Believe it or not, this does happen. It is as though they develop a sort of oral fixation, and they can mistake things like soaps or candles for food and try to eat them. So food or non-food, put everything you don't want her to eat out of sight entirely. Out of sight can be out of mind, if you put them somewhere she won't think to look.

Work on diversion and distraction. Here is a list of ideas for the kinds of things you might be able to do to keep her busy.
http://www.hcinteractive.com/images/101ThingsToDo.pdf

We found my mother in law loved picture books and photo albums and we could often get her mind off something she was obsessing about if we could get her distracted with one of them - looking birds, going for a walk, some household task - anything but stay put and let her go on and on about whatever she was upset about.

Hope this helps. I know this is so difficult. It looks like her, but it is not the same woman anymore. She really cannot help herself.

Mary  



---------- FOLLOW-UP ----------

QUESTION: Dear mary,
       Thanks for helping me.Actually i want to share some more things.My mother in law has an ocd(obsessive compulsive disorder)also.She washes her hands frequently and thinks that to clean har hands she has to wash them in kitchen.After washing in bathroom she washes them in kitchen.She thinks that every thing is dirty and hold things with her clothes.When she washes hands in kitchen she use to put water everywhere and it takes a lot of my time in cleaning.She also has developed a habbit of keeping food items such as bread slices and biscuits in her pillow case and i have to take care of every thing. Idont have a full time maid so i found it very difficult.There are a bundle of her clothes for washing.I dont understand why she keeps on changing clothes.We showed her to a psychaitrist but nothing helped.Can u suggest anything.Actually my mother in law actually has two or three problems at a time.Please help me.

ANSWER: Hi Farsha - whatever her psychiatric problems were before she had dementia will still be there. Now the problem is that her OCD is compounded by short term memory impairment. She cannot remember, for example, that she just washed her hands. She cannot remember you have asked her not to wash them in the kitchen and make a mess. She may not be able to "see" the mess, much less recognize it as a problem.

OCD is an anxiety disorder - and it can also be brought on by dementia. After all, no one is more anxious than a person with Alzheimer's. Their entire world has become a jumble. Some OCD disorders involve damage to the frontal lobe - which could also explain her obsession with sweets and overeating.

It might help to get her onto some anti-anxiety medication or an antipsychotic, which often reduces obsessive thoughts.

Even though she might remember what happened 20 years ago in great detail, her short term memory deficit will mean she honestly has no idea how long she has been wearing her clothing. It might have been a day, or it might have been a week. She has way of knowing which it is. She can't "feel" the passage of time and judge.  If she is worrying about being clean, that will lead her change her clothing. If you KNOW clothing items have only been worn a short time and are still clean, I would quietly take them out of the laundry hamper and put them back in her drawers or closet.  I'd only wash what needs it. There is no point to argue or confront because she really can't change her behaviour.

I know this is very stressful, but honestly, many people have the opposite problem with their loved ones with dementia, and find it even worse. The person will not bathe, wash their hair or hands, or clean themselves after using the toilet. They will insist they are clean, and don't need help, even when they are filthy and smell. Same goes for their clothing - they will wear clothing that is caked with dirt and deny it is dirty, or that they haven't changed their clothing.

I'm not sure why she is hoarding food. My mother in law used to hoard dinner napkins. When she had to go to a special locked dementia unit, at least a couple of times a week I would have to search her room because she would take the cloth napkins from the dining room and hide them everywhere. They would be everywhere. Under the bed, in her shoes, in her sleeve, her pockets, the bureau, the bathroom cabinet, just everywhere. I have no idea why she did that.

Did your mother in law ever go through a period of time in her life, perhaps when she was young, where there was not enough to eat and it was a worry? That might be why she is saving food. She might be back there in her mind, and trying to make sure she gets enough to eat. I have heard of older people, who went through difficult times in their youth, and as they lose their memories, the past seems more real to them than the present, along with the worries they had back then. A friend of mine's very elderly mother thought she was a young woman back on the farm of her girlhood, and she constantly obsessed about the farm animals she thought she was supposed to be looking after. It drove my friend crazy to be asked 100 times a day where the cows were, and when were they going to go milk the goats!  

She also might be worrying about being able to find the kitchen or know when it's mealtime. I would just keep taking it away when she is not looking, and reassuring her at every chance that she is safe. She is just like a child right now, even though she may look like a grown woman, and have some of a grown woman's abilities and memories.

I hope there are other members of your husband's family who can help with her, as her illness will get much worse with time and it will become more of a struggle for you to cope with. Other family members and friends should be asked for their assistance. Even if they could take her out, or sit with her, take her for a weekend, help with housework - anything so you get some time for yourself as well.

Mary

---------- FOLLOW-UP ----------

QUESTION: Dear Mary,
        I am very thankful to you for your guidance.You suggested that i should stop the supply of sweets if she is gaining weight but the problem is that we tried that also and in aggression she wanted to go out herself for buying biscuits and that was the worse phase.She also started taking kids sweet medicines .Then ultimately we had to supply her with sweets.And regarding clothes she use to hide them under her dirty clothes so that i cant see them its only when i take them out for washing i find so many clothes. I think when i am busy she hides them.She does these kind of things in my absence.I also dont have any relatives here in Dubai so its very difficult to send her somewhere for some time.There are no day care centers as well.What should i do?Guide me.   thanks

Answer
Farsha, you and your husband need to talk about her care.

You must realize she is going to get worse and worse with time, and need more and more care. She will need support and supervision 24/7 and you will not be able to leave her alone for a minute - you will have to have someone with her all the time. She will get lost if she gets out, she will be like a two year old who must be watched or they will get into danger. Like an little child, she will need to be bathed and dressed and fed, and will not be able to use the bathroom herself. Eventually, she will not be able to walk or do anything for herself and will be in diapers. She will be awake during the night and keep everyone awake. She will have tantrums when she is frustrated and confused or when she is stressed. If you are having trouble coping with her now, this is nothing compared to what is coming in the future as her condition deteriorates.

You need a plan - I don't know what your financial situation is, or if your mother in law has money of her own, but if you can't cope now, you will need to figure out how to deal with this - you may need to hire someone to assist with her care even now, or bring a relative to stay to assist, since it sounds like she already needs more supervision to keep her safe and healthy than you are able to provide.  

If you also have children to look after, you do need to discuss all this as a family and include other relatives of your husband in the conversation.  Your husband must realize that you cannot do this alone. After all, if you become very stressed from caregiving, everyone suffers. You cannot look after everyone if you become ill and worn out and so upset you can't cope. Perhaps there are other relatives who are better situated to provide full time care than yourself (i.e. whose children are grown up, or who can afford hired assistance).

Below my signature, I have pasted the stages of dementia.. Although every specific cause of progressive dementia has some slightly different features, they all follow the same general trends as brain damage worsens. Essentially, the person is dismantled neuron by neuron, and they go backwards in their development, losing abilities until they are like a baby in an adult body.  

How long this takes can vary from person to person - for my mother in law, it was 7 years from her very first symptoms until her death. She needed full time care by the time she was three or four years into her illness that was beyond what I could provide alone with our three young children  i.e. even at that point, only part way into the illness, she couldn't be left alone for a minute or she'd be into things like a child, taking medications, getting lost, using cleansers and kitchen tools in a dangerous way, turning appliances and taps on and forgetting them (causing floods and fires). She couldn't pick appropriate clothing or dress herself - she would put underwear on top of her clothing, or try to leave the house only partly dressed. She would get upset easily and even try to hit us or scratch us if we tried to help her. She couldn't work locks and she didn't know what to do if something went wrong. She couldn't use the telephone properly. She would get up in the middle of night and think it was daytime. She thought people on TV could see and talk to her. She couldn't use the toilet properly. She couldn't bathe herself at all and didn't think she needed help. She got unsteady on her feet and started to have falls. It was really dreadful - and this was not as bad as it got. Eventually she lost the ability to walk and talk entirely, became completely helpless and had to be spoonfed and cared for like a newborn. She was like that for the last two years of her life.

I don't tell you this to scare you, but to alert you to what will happen next that has to be planned for. You must be ready with plans.  It gets to be quite dangerous, and it can be extremely hard on everyone.

Thinking of you.

Mary


Stages of Dementia

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted
description of the stages of dementia. It is sometimes called FAST (the Functional Assessment Staging Tool). Even today, years later, when experts refer to a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well. No objective evidence of memory deficit on clinical interview.
No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawl from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost